POppy sometimes a medical grade alcohol derived substances is sued as it can help carry an active drug/ingreadiant to the part of the body that needs it.
if you are unsure you can ask to speak with a pharmacist before purchasing a product, chat with a dentist who knows you as long as you let them see the details of the chemo drugs et al the hospital have you on or even call the hospitals 24/7 advice support helpline for those having active cancer treatment.
I nearly screamed when I saw my oncologist had prescribed me an emoillent that contained alchohol as previous experiences had told me that on my skin is bad news BUT it was slightly different form and used to help my skin absorb said emoillent. Other emoillents I had tried did not have any so my oncologist was correct about thinking my skin needed Ćt to help Ćt access the good stuff in an emoillent to begin to calm down. please also bear in mind their is a huge difference between a hint of alcohol used as a caries in some mouthwashes and having a unit of alcohol to drink. IF you do need to avoid all alcohol it will be made pretty clear to you and if you are unsure how much you could have call the hospital and ask. letās face it chemotheraphy nurses ask about illegal drug use as they deal with real people trying to live real lives so asking them about this will be nothing they have not met before.
Thanks @wibbles . We were getting confused as the Nurses told me not to use Corsodyl because of alcohol in it possibly aggravating mouth tissue more.
Then @baldiesrus realised the mouthwashes they then prescribed me, Difflam and equivalent, actually, also have ethanol in. . Which confused the heck out of me.
But obviously Nurses are tied to Pharmacies, so cant prescribe everything. So cant promote some things (like Corsodyl), but can others (Difflam).
Perhaps the alcohol content was not really an issue. .
Equally, sometimes nurses are only familiar with prescription medication, so may get confused with other over the counter items, and just try to veer us away from them.. .
I was told by one not to use Bonjella. Then another one said I could use itā
At least prescription meds are free. But it doesnt half get us confused.
Hi @wibbles and @poppy261, good point regarding the alcohol as a carrierā¦never thought of that. I wondered if it acts as as a way to keep bacteria away( but I am probably making stuff up lol} I think Alcohol free is meant to be more gently on mouths and less stingy?? But yes there are people that need to avoid the alcohol ones for various other reasons.
Looked at the ethanol content in the strong Corsodyl ( very stingy on normal mouths) which is 7% and the new stuff I have been given which is higher at 10.? %. Perhaps The active ingredient, in combination with all the other stuff in there is what makes the difference?? Keeping fingers crossed this new stuff works when Iām at my worse, feels better already though.
Glad @wibbles has been given a emollient that seems to be working better. Must be such a relief! Lotions and potions for eczema and psoriasis doesnāt seem to have made progress over the years . Hoping you keep getting some relief
@poppy261 Hoping today isnāt horrendous, eat and sleep is what I do tooā¦.mine usually hits Friday/Saturday. I feel like a creature that comes out out itās nest to forage and then goes back to sleep. Meaningful conversation and trying to remember stuff goes right out the windowā¦.Iām not sure my kids have twigged yet, I give vague answers lol.
A shout out to any one with children, (mine are 13 and 18). They are so resilient and just except stuff, for most part. Iāve always encouraged them to ask questions and talk to me, and they do. When I sat them down to tell them my diagnoses( on a Friday so they could process it over a weekend)ā¦..they were apparently wondering who was left of the older generation to die. They have delt with lots of death of various family members since 2016, some expected due to long term conditions and some a shock. But hey have taken every thing in their stride. I have told them what to do in an emergency, and where to find my important stuff ( Always good to react first and panic second!) Accidents can happen to anyone, after all. My older one seems to worry more, where as the younger one doesnāt appear to. I do have an excuse to request hugs every now and againā¦.they get less huggy as they get older, mind you, hubby also requests hugs of too, but I get moreā¦.favouritism .
Try and keep well everyone and have a nice cool day
Regarding the pac dose, was told to expect to be there for about 3 hoursā¦.30 mins for the antihistamines and steroids( I think steroids lol)ā¦.gives them time to hopefully prevent side effectsā¦.obviously any one cold capping needs much longer. Thatās assuming you get your pre-meds to take home and take in advance. Another nurse from dose 3, thought I would still have the 3 days of Dexmathasone to take in the mornings and the 7 nights of injectionsā¦..but we will see what they give me lol.
Yes I think foraging creatures sounds like me @baldiesrus . very sloth like .
And definitely a huge shout out to all you Mums, children, teenagers, husbands, going through all this. I think you are all unbelievably strong and amazing people. .
Trying to navigate a way through the fog of the unknown, is hard for everyone, but when you are helping young people to navigate it with you, it is no easy task.
Keep those hugs flowing .
Even if they are more virtual in nature, via a note pictureā, smileā kind wordā, special gift . Hugs come in many different forms. Embrace them all strong ladies. And make sure you give yourself lots of Pamper Moments and TLC.
Morning all! Iāve been MIA for a few weeks getting over my 3rd dose of EC. Iāve had some good news in that my consultant has cancelled the 4th EC and Iām heading into the unknown today for my first docataxel. Feeling nervous because Iāve got to learn new side effects now.
Iāve got my first radiotherapy consultation date in September too so things are strolling forwards.
I have found out that I have got a breast cancer gene (not BRACA) so Iāve also got a genetic appointment too. Iām certainly getting out more visiting the hospital than I would do normally . Iām usually much happier spending time in the garden!!
Welcome back @dcfc84 I just had my first Docetaxel on Tuesday, which felt like a big milestone! It was a bit uncertain whether Iād go ahead with treatment on the day as Iām having some blood clot issues in my right arm
So far, I have to say Iām feeling a lot better than what I usually did on EC. Iād be hit immediately with nausea which would last the best part of a week for me - so far this hasnāt happened on Docetaxel, which is welcomed!! Although still donāt have much appetite.
From what Iāve read and been told so far, sometimes the worst of the symptoms usually strike on day 5-7 onwards, so perhaps the calm before the storm?!? But I know everyone is different. At the moment I feel lucky, but due to start the injections from tomorrow so will see if that has any effects!!
Best of luck with today - I know what you mean, as nasty as EC was Iād kinda adapted to a routine, this feels like a new unknown Docetaxel, letās be having ya
Thank you so much @poppy261, much appreciated How are you faring yourself?
Thank you, I have everything crossed - itās funny how much you adapt to one thing to then prepare for another! Weāll see what the weekend brings!
Hopefully my arm will forgive me at some point for the EC - seems to have fallen out with me for the time being (uh oh!!) but maybe some blood thinners will be enough of a bribe to start to heal a bit haha!!
Malarkey & Thanks for the info re-marmalade and grapefruit, who knew! Just alongside the food thing, I was avidly taking things like flax seed which are supposedly fab & anti-cancer, but my pharmacy team have taken me off anything soy and flaxseed as itās massively phyto oestrogens - so for those of you with ER and PR very sensitive Breast cancers ( Iām 8/8 for both) maybe just be wary of this as well x
Iām heartened to hear with some of you , that Paclitaxel is perhaps a little gentler on us. Thatās my next chemo phase - Iāll be having 12/12 weeks is anybody else having pac weekly? Iām well into my third EC now and it has progressively got harder to cope with, each round - definitely accumulative effective isnāt it?! luckily I have a portoCath implant my chemo goes in ( affectionately named Pedro) so I havenāt been struggling with all the vein issues bless you that some of you have- gosh that just adds to the drama it all it? I do hope the pesky veins are holding up - as you all , are my fellow warriors
Thanks so much @elastigirl for the heads up re flax and soy. Im 8/8 so I will definitely steer clear of those.
The fact we get so little food info from NHS, its even more important to share as much as we can. Chemo creates enough problems without food making it worse. .
Sorry youāve also had cumulative EC nasty stuff. It doesnt half kick a punch over time, . Hope its kicking those cancer cells as much as it kicks us.
Fingers crossed Pac is better. Im on fortnightly Pac as of next Friday.
Forgive me if I am wrong ladies, but I think @Jaybee@alannah172 and @jordx90 are on weekly Pac. Which is suppose to be easier to tolerate compared to EC. .
How we hope, hey
@daffodil_dream sending you all the positive vibes possible in the hope Pac continues to be kind to you.
And your body forgives you for giving it EC. I was hit hard the last 2xECs. Waiting for the side effects to vacate my body. Grim stuff isnt it. Xxx
We can do this. And when we cantā¦.. just say it as it is. All grumbles welcomed. Goodness we need to grumble some days.
Well, soy sauce is a new one on me! Dammit. I do a lot of stir fries and soy is a prime ingredient, so Iā'll need to rethink that one. Iā ve certainly had NO advice from anyone at the hospital, about anything much to be honest and certainly nothing about diet. No earthly point me asking, theyā ll merely shrug and fob me off.
Soy must be a tricky one to avoid for anyone in a Chinese/East Asian community, used to cooking their traditional dishes.
But thanks for sharing the info. No marmalade and soy sandwiches for us in the foreseeable future eh, girls?
Cycle 3 EC, half way to next cycle. Eleven days of total fatigue, streaming nose, etc. Gee but itās getting very, very boring. And the minute I get a small burst of energy and want to get out in the garden to do some work what happens? Yep, it pees it downā¦..
Have the best weekend you can, girlsā¦.sending best wishes
You make me laugh @bea4 . . You are one strong lady . EC is garbage thats for sure. All we can do is rest up, and wait for it to be over.
The runny nose is seriously annoying isnt it . Ive never needed so many tissues. People think I have a cold until I tell them its the no hair chemo challenge. Then they look politely apologetic. .
Glad you started the debate around food. . Tricky having to re jig ingredients to stir fries.
@sam1204 do you know of an alternative to soy . I bet theres one somewhere on āCancer made me eatā but I would struggle to read through all the Posts to find it . Being in sloth mode at the moment .
You look after yourself bea4 You are doing incredibly well. Most of us are struggling with EC. .
Sending strength, love and virtual flowers to compensate for rainy garden days. At least rain makes it cooler. Yin and yang and all that jazz.
This is an interesting article from Maggieās Cancer Charity.
It says if you are on Hormone Blockers for cancer, to be cautious re Commercial Soy. But its a balanced argument, and explains why western Soy is more of a problem compared to Asian Soy.
I will leave it there, for you to read. Basically, always check with Oncology.
Very interesting article, @poppy261 , thanks for that!
Itās the soy sauce Iām most concerned about, I donā t eat soya products at all, unless they sneak in somewhere. I only use Kikkoman soy, which is naturally brewed in Japan and contains only trace amounts of phytoestrogens, which apparently donā t significantly impact hormone levels. However itā s hellishly high in sodium! Canā t win, really! I donāt think adding a splash of salty dark soy once a fortnight to a stir fry is going to tip the scales, somehow! Although it might raise my blood pressure!
Itās all fascinating, this dietary pros and cons stuff, isnāt it?
I agree @bea4 . I had no idea how foods/supplements/additives would be so tricky with certain cancers. Its like the Crystal Maze Challenge everyday.
I was told to stay away from all supplements during my treatment due to my cancers feeding off them. Who would have thought that was possible. . Treatments and cancers are so complex.
Good to be aware, then we can make informed choices.
I had years of ulcers as a child. Most weeks. Soo painful. Then as I grew up I went into a sweet shop and saw Pear Drops, that Id had as a child. Excitedly I bought a bag for nostalgiaās sake. Gleefully ate 3. Then bang. Ulcers. !!!
I suddenly realised, as an adult I rarely ate boiled /sugar sweets. And had rarely had any ulcers. The penny dropped. Lightbulb moment.
Sugar feeds ulcers. If you are prone to them. So all those years of pain could have been avoided if someone had told me to not eat sugary sweets.
Some people could eat a truck load of sweets and be fine. . Sadly not me.
We want to avoid anything that could get in the way of beating this cancer. We are all different. We are all on different treatment plans. Research is always being updated. So its a confusing road we travel.
So keep the sharing coming ladies. Its invaluable.
Ouch @poppy261 ! That sounds awful! Mouth ulcers canāt be any fun. Do other sugary foods do the same to you, or is it the prolonged sweetie-sucking that causes them?
Me? Iām a sucker - pun intended - for mint humbugs! Luckily they donā t affect me in that way. Iā ve seen a few women on these threads who have found they helped with nausea, something which, fortunately, I have escaped completely, so far!
I suppose, regarding diet and various foodstuffs, cancer research is always ongoing, proving or disproving theories, but mostly sitting on the fence because thereā s only so much money to go round, and itās such a vast minefield.
Day 11, post Cycle 3 and finally I feel almost human! Guess what? Yep, itās raining The gardening will have to waitā¦
Thankfully, strangely Im not bothered by mints @bea4 ā¦Yet.
But I do have to be careful with Sticky Toffee Cakes.. .
Im equally, ānormallyā, fine with other cakes, pies, deserts. Its a strange one.
But Ive noticed Im having to be much more careful on chemo. My skin is reacting constantly with eczema flare ups on hands and feet.
And various ānormalā sugar products are a trigger for my mouth. Even sugary drinks/cordials/custard Ive had to stop having or my mouth gets sore. ouch. Yet I was fine with Tiramisu the other week??? May depend on stages/timings of chemo impactā. Days 5-7 are when my whole body feels on fire. Which would make sense for normal deserts suddenly becoming a problem. But boiled sweets are a permanent problem with or without chemo.
Glad you are starting to have a better day today. Bloomin rain though . It could pick night times to come, and leave daytimes dry for you. Big band coming over the North /West of Britain as well.
Good for your flowers, plants and wildlife though
I will avoid putting pesky snails as they love the rain and eat all my friends Veg in the wet weather . They think veg are grown only for themselves. Hes tried planting three lots of beans and each time the snails have eaten them until only stubby stalks remain.
Im getting good with BBC IPlayer. Great for boring days inā. Dont have all the fancy stuff. But some decent programmes that I can fall to sleep watching on chemo days , but then can replay over and over until Im awake enough to watch the whole thing . My new norm
Keep smiling, keep laughing. We will be through this before we know it. If I sleep the week of chemo, and am awake the other, then my 8weeks of chemo that remains will only seem like 4 weeks.
@poppy261 sorry for late reply, just seen this. When you say an alternative to soy, do you mean in terms of soy milk? Or protein powder? Or generally (as in things like tofu)? There are alternatives to all of these. Let me know!
. Which confused the heck out of me.
.
. Hoping you keep getting some relief 
very sloth like 
.
pictureā
, smileā
kind wordā
. Hugs come in many different forms. Embrace them all strong ladies. And make sure you give yourself lots of Pamper Moments and TLC. 
. Iām usually much happier spending time in the garden!!
I just had my first Docetaxel on Tuesday, which felt like a big milestone! It was a bit uncertain whether Iād go ahead with treatment on the day as Iām having some blood clot issues in my right arm 
Docetaxel, letās be having ya 
are my fellow warriors 
Im 8/8 so I will definitely steer clear of those.
. Ive never needed so many tissues. People think I have a cold until I tell them its the no hair chemo challenge. Then they look politely apologetic. 
.
.
The gardening will have to waitā¦
ouch. Yet I was fine with Tiramisu the other week??? 
